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After almost 5 years of battling Lewy Body Dementia, my husband passed away in November of 2016. He was only 63 and had been extremely fit and active before his illness. Throughout our Lewy Journey, I often felt he was nearing the end as he seemed to decline rapidly at times, and I couldn’t imagine him living for much longer. From the time I began having those thoughts until he actually passed was between 2-3 years.

Now that we’ve finished our journey and I’ve interacted with countless other caregivers, I can see a basic decline pattern that most seem to follow unless they die suddenly from pneumonia, heart failure, sepsis or some other illness. I’m sharing what I learned with hopes that it’ll give you a heads up with the types of things that will likely happen in the final months of your loved one’s journey.

There have been countless articles written on the stages of decline for those with dementia, but very little given to the stages caregivers go through while dealing with a disease like LBD. Recently, one of my support groups worked together to organize a description of the stages a typical caregiver goes through during the years of caregiving duties. It was difficult to separate emotions from actual stages, but the list below seemed to fit most of the participants. It was agreed that (as with the stages of grief) it’s possible to bounce back and forth between some of the stages and to experience two stages simultaneously, particularly the last two.

Has anyone ever said something to you that resonated like a bell? You know, something that on any other day you wouldn’t even have remembered it, but because of your situation, the sentence or advice shouted at you like a message from Heaven? You hear trumpets sounding and a chorus singing, and your heart says, “Yes! Yes! Those words were intended for me!”

Well, I had one of those moments not long ago, but in order for this post to make sense, I need to fill in a little back-story. Read the rest of this entry →

If you had asked me to define remote years ago, I would say that it meant a place that was hard to get to or it described a person who was not prone to interact with others. My remote experiences included lakes in northern Wisconsin and my husband’s uncle who everyone said was “weird.” As a dog person, I thought that cats had remote behavior.

In the 1980s, remote underwent a grammatical shift, moving from adjective to noun. Finally there was a way to change the TV channel with The Remote, which often got lost and became a chewy toy for the dog. We found out the hard way that the VCR remote was expensive and the dog would not pay his share. Read the rest of this entry →

One of the characteristics of Lewy Body Dementia that sets it apart from other dementias is something known as Fluctuating Cognition. Our loved ones can go for long periods of time with very little decline, then BOOM they drop off a cliff only to return to a pre-cliff condition (or close to it) without any rhyme nor reason. It keeps caregivers in a never-ending state of limbo. Read the rest of this entry →

The Lewy Body Composite Risk Score is a quick test developed by Dr. James E. Galvin for the purpose of giving doctors a three minute assessment to use if they suspect Lewy Body Dementia with a patient.

The test is scored on a continuous scale with a range of 0 to 10. “You simply check present or not present and add up the number of yeses, and three or more yeses suggests that Lewy bodies are the underlying cause of the dementing process,” said Dr. Galvin.

Criteria

1. Have slowness in initiating and maintaining movement or have frequent hesitations or
pauses during movement?
2. Have rigidity (with or without cogwheeling) on passive range of motion in any of
the 4 extremities?
3. Have a loss of postural stability (balance) with or without frequent falls?
4. Have a tremor at rest in any of the 4 extremities or head?
5. Have excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6. Have episodes of illogical thinking or incoherent, random thoughts?
7. Have frequent staring spells or periods of blank looks?
8. Have visual hallucinations (see things not really there)?
9. Appear to act out his/her dreams (kick, punch, thrash, shout or scream)?
10. Have orthostatic hypotension or other signs of autonomic insufficiency?

*3 or more yes marks means there is a high likelihood of Lewy Body Dementia

If you are not sure about #10, click on the link and it’ll take you to an article to explain that aspect more clearly.

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A note to all those friends and family members who think our loved ones are “just fine.”

“My friend came to see my dad and he greeted her and talked pretty good. The next time she came (he) had no idea she was even there and way out if it. It was refreshing to have her see what I see daily with the fluctuations in attentiveness. She finally gets what I try to explain to my friends.”

Whenever someone says “dementia” the vast majority of those not dealing with the situation automatically assume you’re referring to Alzheimer’s. They have no idea there are several different types of dementia with Alzheimer’s only being one of them. While some might not think that’s an important issue, for those dealing with Lewy Body Dementia, it’s a never ending source of frustration.

Lewy Body Dementia is not like Alzheimer’s.

There are some things in common, of course. According to Medical Dictionary “Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.”

Both Alzheimer’s and Lewy Body Dementia share those characteristics, but LBD has many added components not typically present in Alzheimer’s. It’s been said that LBD is like having Alzheimer’s, Parkinson’s, and Schizophrenia all at the same time. Read the rest of this entry →